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"One of the common side effects of HIV and AIDS is neurocognitive impairments—changes in how fast a person can process information, pay attention, multi-task, and remember things—yet there are no adequate tests to screen HIV patients specifically for these problems, according to a new study out of St. Michael's Hospital."

In other bad news, HIV can apparently replicate without that pesky integration step. Stick that in your fancy integrase inhibitors. Gulp.

"For decades, scientists have been confident that HIV-1 must insert its genetic material into a cell's DNA in order to reproduce. This process, called “integration,” makes the virus a permanent part of the cell. Dr. Levy's National Institutes of Health (NIH)-funded research, published online in the Journal of Virology, with lead author Dr. Benjamin Trinité, a post-doctoral fellow in Dr. Levy's laboratory, has shown HIV-1 can sometimes skip this integration step entirely."

Nah, I just read this because there are some people who think I'm more informed than I am, and I don't want to disappoint them. I post stuff here that I think maybe other people might be interested in but might not see. I mean, who reads Positively Aware?

I need to find a print copy of the latest one, though, because there's a full-cover pin-up of all the pills. I only have last year's model sans Stribild. This one includes an erstwhile unbranded dolutegravir and the dolutegravir / abacavir / lamivudine Trii combo.

I'm glad you brought up the topic of HAND. In fact, I just referenced it in a post I made yesterday, but I had actually been thinking about starting a new thread to gauge people's experiences with, and knowledge of, HAND.

I suspect I have subtle symptoms, and these are the effects that showed up in my past neuro-cognitive and neuro-psych testings (most required by disability insurer). While I am very active and skilled in several areas, I have noticed deficiencies that I strongly attribute to HAND. Because I went for many years with detectable VL, even on meds, it seems likely to me that HIV would have its effects in the long run.

The most frustrating for me, and the most prevalent symptom, involves writing and proofing, which was one of my professional backgrounds, the one that my disability claim is based on. I can hardly ever write something without mistakes or typos, despite my best efforts to type carefully and proof thoroughly (spell-check goes just so far). So given my past expertise and skills, this is a distinct and documented change in abilities.

I'd sure like to hear about others' experiences with HAND, especially long-term survivors.

And if you read this post or others and find a typo, you have been warned!

I've thought intensively about this topic and I have a few things to add...

1.viremia makes you stupid: I routinely take cognitive assessments as part of my work. When I was virally suppressed during the earlier stages of asymptomatic hiv (i had no idea) I would score very well (99th percentile thank you very much). When I started to I off the cliff and get viremic my scores dipped to the high eighties low nineties. In the throes of AIDS with a viral load around 300k I was 40th percentile. As soon as I started Haart I noticed my brain was working much better. So it's not necessarily permanently damaging. I am interested to see in this years assessments how much I bounce back.

2. Efavirenz is a dissociative drug (it's now abused in South Africa by negative people!), and studies show that it results in a similar decline in cognitive functioning as "hand" when compared to boosted pi regimens. So all studies of hand would have to account for this.

3. Depression is higher in hiv positive people than in the general population, and this can account for cognitive decline as well.

So I think that there is some overestimation of HAND's effects, but I would be in denial to say that hiv doesn't have cognitive effects, as I've noticed with my viremic experience.

“Identifying that patients have a mild form of this condition is critical,” said Rourke. “Even mild neurocognitive problems can have a significant impact on a person's everyday functioning, affecting his or her ability to take medications or ability to perform at work, and may also lead to more social isolation and withdrawal.”

This is what I hope to get the disability judge to understand. (along with many other issues)

I already spoke of my experience taking a functional cognitive test. The doc wrote that I should get more engaged in life and go back to work part time.

After reading the whole link (thanks Lee), it doesn't look as if there are tests available to determine milder cases of HAND. I know my cognitive abilities have gone down hill for quite some time (at least a decade) although there was a noticeable improvement after dumping Sustiva. Still, I doubt that I will ever regain the abilities I once had.

Some days are better than others as far as my ability to focus is concerned (many witnesses here) but I know HAND is a major reason that took me away from work.It's real, it's frustrating, it sucks.

On a more pleasant note...I have learned and am still learning how to adjust. I try to even have a sense of humor about it at times. Not always easy but what else can you do.

I also think doctors play a role in dismissing these concerns. When I fired my previous idiot doctor, he forwarded copies of my medical records to my new doctor. Thanks to Webview, I was able to read the entire file.

I made reference to my cognitive decline almost a decade ago and he wrote that he noticed no marked decline. WTF??? To be dismissive and not even address the issue was his typical MO. He also included notations that it was probably due to illicit drug abuse.

But again, this was idiot who dismissed my cryptococcal rashes as unremarkable. I was fortunate that my current doctor happened to be at the hospital when I was admitted through the ER nearly dead. Blind, deaf and dumb...

I'm convinced I'll never be able to perform things that were routinely easy for me in the past. Being a former budget analyst for the federal government required detailed precision. Now I struggle just to balance a simple checking account.

I think we'll see more research in this area as so many of us are reaching the LTS status.

@ Mitchypoo, I too have learned to laugh at myself. It sure beats stressing about it. Hell, it's not even an adventure if I don't get lost. Someone my age shouldn't be this confused about how to navigate. I recently had to return to the city for a dental appointment. I did pretty well until I got close to home. Lo and behold, I took the wrong exit off the interstate and ended up lost. This in an area that I've known most of my life.

Logged

Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Maybe you could work in health services, social services, or pharma even, in communications functions.

Oh, I gave up on ever having another professional job. I'm just going to live on HIV/AIDS welfare until school is done. There's job placement assistance after 'graduation'. It's a good thing, because it's turns out I'm not so good at this stuff, hyuk hyuk.

I'm glad you brought up the topic of HAND. In fact, I just referenced it in a post I made yesterday, but I had actually been thinking about starting a new thread to gauge people's experiences with, and knowledge of, HAND.

I suspect I have subtle symptoms, and these are the effects that showed up in my past neuro-cognitive and neuro-psych testings (most required by disability insurer). While I am very active and skilled in several areas, I have noticed deficiencies that I strongly attribute to HAND. Because I went for many years with detectable VL, even on meds, it seems likely to me that HIV would have its effects in the long run.

The most frustrating for me, and the most prevalent symptom, involves writing and proofing, which was one of my professional backgrounds, the one that my disability claim is based on. I can hardly ever write something without mistakes or typos, despite my best efforts to type carefully and proof thoroughly (spell-check goes just so far). So given my past expertise and skills, this is a distinct and documented change in abilities.

I'd sure like to hear about others' experiences with HAND, especially long-term survivors.

And if you read this post or others and find a typo, you have been warned!

I feel dumb as a box of hammers with the attention span of a monkey wrench, whereas I used to do alright. I just attribute it to old age, but you could be on to something here. I don't suppose we'll ever know since I don't have a baseline.

I did OK recently on a vocational assessment (mostly a bunch of SAT-type, reasoning and mechanical questions). They only scored up to high school level, and I at least got above that point. Haha. Ha.

This is what I hope to get the disability judge to understand. (along with many other issues)[...]On a more pleasant note...I have learned and am still learning how to adjust. I try to even have a sense of humor about it at times. Not always easy but what else can you do.

Hey, Mitch. I've been following that thread. It sounds like an ordeal, to say the least. It depends on the state, though, right? They make it sound like here in NY all you have to do is fill out a form.

Yeah, a sense of humor gets me out of the kinds of jams I used to rely on my wits for. Nobody wants to pick on the goofy guy with HIV.

I also think doctors play a role in dismissing these concerns. When I fired my previous idiot doctor, he forwarded copies of my medical records to my new doctor. Thanks to Webview, I was able to read the entire file.

Oh, how I'd love to see all my psych files through the years. I sort of wish there were a national database, even though that's scary. I'd love to see my medical history from start to finish. I don't even know what childhood diseases or vaccinations I had.

I feel dumb as a box of hammers with the attention span of a monkey wrench, whereas I used to do alright. I just attribute it to old age, but you could be on to something here. I don't suppose we'll ever know since I don't have a baseline.

You write too well nobody's going to believe you've had brain rot of any sort.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

"One of the common side effects of HIV and AIDS is neurocognitive impairments—changes in how fast a person can process information, pay attention, multi-task, and remember things

This is where I get in trouble . I can do almost everything the same way . It takes me 2 hours to do what used to take 1/2 hour . My doctors have said , " If you can build a house , You are fine ! " , I disagree ! Living in a fog world got old a long time ago . Some say it is age , But 59 is not an age of being old .

Hey, Mitch. I've been following that thread. It sounds like an ordeal, to say the least. It depends on the state, though, right? They make it sound like here in NY all you have to do is fill out a form.

Yeah, a sense of humor gets me out of the kinds of jams I used to rely on my wits for. Nobody wants to pick on the goofy guy with HIV.

I guess it depends on many people throughout the system. Ordeal? yes. The government sees a need to put us through the wringers to see if we qualify as if we didn't have enough to deal with.

This worries me to he honest. I notice I am not as sharp as I use to be. I struggle sometime to remember things that I use to not have a problem remembering. I have only what I refer to as "brain fog" because I not sure how to explain it. It get bad sometime I can not function. I glad it is not all the time. I ask my doctor about this and he told it the virus in my brain and the medication will eradicate it at some point.

Hmm I think I am going to need to have another talk and bring up this H.A.N.D.

You write too well nobody's going to believe you've had brain rot of any sort.

I agree that he writes exceptionally well!

However, we must understand that "brian rot" doesn't always take the form of simple slow speech and thouight patterns. Depending on the area of the brain affected, it can manifest in delusions, hallusinations, and other forms of altered thinking. In situations like that, having an otherwise shapr mentality, creativity, and grasp of the language might actually hinder diagnosis.

A) The person might not want to have the impairment known, so s/he can easily hide it for a long long time.

B) The person might be ashamed or terrified of it, and compensate by throwing his/her entire cognitive ability into masking the symptoms.

C) The person might be intellectual enough to construct an elaborate explanation for his/her delusions and/or altered thinking. Again, extending the time it takes to diagnose.

Brain stuff is serious business, and it can be insidious and, of course, one's natural instinct is to hide/mask/rationalize it. That's just hardwired into our evolution.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

However, we must understand that "brian rot" doesn't always take the form of simple slow speech and thouight patterns. Depending on the area of the brain affected, it can manifest in delusions, hallusinations, and other forms of altered thinking. In situations like that, having an otherwise shapr mentality, creativity, and grasp of the language might actually hinder diagnosis.

Hallucinations?! OIC. Well, I haven't heard any voices since the antipsychotics, so even if HIV exacerbated that (which I doubt), it's still manageable. I never found the voices all that traumatic, to be honest, but mine were easy to tell from real ones, and I just knew to ignore them. They said stupid shit anyway, nothing worth being upset about.

I'm sorry this affects so many people, but I'm glad some of you found the link practically useful.

Hallucinations?! OIC. Well, I haven't heard any voices since the antipsychotics, so even if HIV exacerbated that (which I doubt), it's still manageable. I never found the voices all that traumatic, to be honest, but mine were easy to tell from real ones, and I just knew to ignore them. They said stupid shit anyway, nothing worth being upset about.

I am glad. My own experiences with hallucinations were fairly traumatic.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am glad. My own experiences with hallucinations were fairly traumatic.

Yeah, I've heard some horror stories from others. I'm pretty lucky. Mine didn't even affect my day-to-day life since they mostly came out when I was alone. My psychiatrist didn't find it as benign as I did (do).

It appears HAART can hold back HAND, at least in this study from South Africa.

Background:

Quote

"Although [antiretroviral therapy] has reduced the incidence of HIV dementia, the prevalence of milder forms of HAND has increased. It has been postulated that incomplete central nervous system (CNS) viral suppression or potential drug toxicity, both of which could be related to the CNS penetration effectiveness (CPE) of ART regimens, may contribute to this phenomenon."

Notes:This study was specifically related to HIV clade C which is common in South Africa. If you're in North America, Western Europe, Australia or more western parts of South America, which I know many of you are, you probably have clade B. Whether or not that matters for this study is not stated.

The study was interested in CPE because the first-line regimens available in South Africa have lower CPE than newer pills.

It's a busy season for this topic, I guess. Here's another one from the Journal of NeuroVirology's September issue. In a nutshell: "recency of HIV-1 infection and the development of DM (dual-mixed) tropism may be associated with HAND in the relatively early stage of infection".

Tropism refers to whether or not HIV uses CCR5 or CXCR4 co-receptors to enter a CD4 cell. Dual-tropic viruses can use either. Mixed-tropism means in one person there is both a viral population that can use CCR5 along with a population that can use CXCR4. The tests can't determine which of these (dual or mixed) is the case in any given person, so they often just use the term “dual-mixed”.

This topic came up (at least) once before on here after a friend of mine told me he's DM-tropic...

Sorry, this is the last one today, but these are all new. Maybe these should have gone in the "Research" section, but I attached them to this thread. Feel free to move if that's more appropriate.

Also from the Journal of Neurovirology's September issue: "Older individuals with HIV infection have greater memory deficits than younger individuals"

Quote

"There was a higher proportion of amnestic cognitive impairment among older subjects than younger subjects with HIV infection. Neurodegenerative processes other than those directly due to HIV may be increasingly important as individuals with chronic HIV infection and HAND survive into older age."

"Amnestic" in this case refers to memory issues as opposed to other cognitive impairments.